By Alexandra Fraser, Breast Cancer Action and BAYS member

Finally, the lymphedema complication I’ve been dreading for the past few years came to pass — the skin infection cellulitis. A few weeks ago, I was leading a conference call when I felt itching and burning inside my arm. I ripped off my cardigan and two layers of thick compression sleeves to see that my elbow had a large, angry, red patch with dark red streaks. I abruptly handed over the leadership of the call to one of my teammates and called a nurse. Her response was swift and clear: go to the emergency room immediately.

At the emergency room, hospital beds and gurneys overflowed into the lobby. Down the hall and around the corner snaked a line of chairs filled with patients of all ages and colors, many with obvious injuries and several who were visibly bleeding. The man at the intake desk did not send me to sit in this line as he did with the patients ahead of me; he sent me directly to a triage nurse. Her eyes grew large as I explained my symptoms. She led me past the line of patients and directly to a treatment room. A few tests and a few hours later, I left with a course of heavy duty antibiotics and emphatic praise from the doctor: If I hadn’t come in immediately, it would have been so much worse. My body temperature spiked three degrees while I was in the emergency room. The antibiotics quickly resolved the infection, leaving no trace of the angry redness by the next morning. Left untreated, a bout of cellulitis can result in gangrene, sepsis, amputation, and even death. Cellulitis can become a recurring complication for people with lymphedema, resulting in some sufferers taking constant antibiotics for the rest of their lives.

The rest of your life… that phrase so often comes to mind when living with lymphedema. Once you have it, you will have to manage it for the rest of your life. I’m incredibly lucky to be alive and cancer free. But lymphedema is something to manage, to endure. It is almost always progressive. Despite constant treatment with compression and frequent physical therapy for manual drainage, my lymphedema has gotten a bit worse every few months. In the five years since I developed lymphedema, my arm has slowly grown to a larger and larger size. My skin integrity is diminished and I have frequent rashes, which makes the swelling worse. I can’t imagine how big my arm would be if I couldn’t get access to medical compression. As a result, my doctors and therapists have increased my compression to a double layer up to the elbow. When they couldn’t increase the compression any further with elastic sleeves, they added a bulky neoprene garment with straps as part of my regimen.  As my arm grows and my compression increases, so does the discomfort. At its worst, it feels like a headache in my arm. Even on good days, I feel a pressure and tightness. My arm is heavy to carry around. The discomfort isn’t just in my arm; I also feel a constant tightness in my ribs. On bad days my diaphragm gets partially locked and my breathing is constricted. On those days, my abdomen becomes distended. With the additional arm girth, my wardrobe options are greatly diminished. It may seem superficial, but dressing professionally when you can only wear clothes with stretchy sleeves isn’t trivial. My wardrobe is now full of cardigan sweaters that are stretched tight over my left arm, and I typically blow out the left sleeve of each sweater in a few months.

At work, at my kid’s school, around town, people ask about my arm all the time. I’m busy being a scientist, a business woman, and a mother. I forget that I’m visibly different until someone asks, or I catch my appearance in a mirror or a photo. And then I feel sad. Lymphedema is hard to explain, especially without bringing breast cancer into the discussion and even then people don’t understand why it is a permanent challenge. I feel like I’m dragging a heavy cinder block behind me – the weight of my arm and the weight of my cancer history. I’ve developed some defense mechanisms to shrug off people’s questions without explanation; it takes a lot of mental energy to decide how much to explain. People who have known me for years still ask me when it’s going to get better and when I can stop wearing “that thing,” motioning to my ugly compression garments.

Because of a job change, in 2018 my health insurance changed to an HMO for the first time, after having a PPO for several years. While compression garments weren’t covered at all under the PPO, the HMO will cover up to four sets (glove and sleeve) of garments per year. This is a bit of respite from the cost of the garments, which run about $500 for a set. They wear out often and I usually need six to eight sets per year, so I still incur costs. While both insurance plans offered competent physical therapists who can treat lymphedema, the PPO offered weekly or biweekly treatment from my choice of providers while the HMO offers treatment every three weeks or so. I can’t always get an appointment with the one provider who lives in my city.

I’m sick and tired of having lymphedema and there is nothing I can do about that, but I find it inexcusable that compression garments aren’t readily available through all health insurance plans. It’s been almost ten years since the Lymphedema Treatment Act was first introduced to Congress. Every year Congress fails to pass the Lymphedema Treatment Act, hundreds of thousands of people go without essential medical supplies and compression garments to treat their lymphedema. But we can do something about this.

Thanks to a new House rule, we have an opportunity for a guaranteed vote if the bill gets 290 cosponsors. Last year, we reached 385 House cosponsors and we’re already halfway to having the number we need this year.

Join me, Breast Cancer Action, the Lymphedema Advocacy Group, and hundreds of others in calling on members of Congress to cosponsor the Lymphedema Treatment Act. Make sure these legislators know you care about equal access to lymphedema treatment. Because it’s time Congress did something good for women’s health.